Happy 4th of July everyone! We wish we could be home celebrating but we’re still here at the hospital.
We’ve been here longer than the last round and no idea as to when we’ll be leaving as her ANC was still at 0 last night. It was a rough night as she was in pain and throwing up all night long in between her Tylenol and Zofran. She’s just been so pitiful and it breaks my heart that I can’t make it better.
Our Instagram post from today:
This little girl had a rough night again.
Something is hurting her. She’s been teething and chewing on her hands but it seems like it’s something more.
She has no visible sores in her mouth or on her bottom but they could me anywhere along the digestive tract. Unfortunately if they can’t see them then there’s not a lot they can do.
She got a little Tylenol earlier and I’ll be asking for some more Zofran or Benadryl in a bit as she’s been throwing up too.
She can’t have Tylenol too often because it could mask a fever which is something we need to be extra careful to watch for as well right now.
She’s just so miserable and there’s nothing we can do to help. We just need those counts to recover so her body can heal.
Please pray that this will pass soon. Thank you all!
Thankfully the doctors agreed with what I was thinking about her having sores where we couldn’t see. They said this is looking like a classic case of mucositis. Hopefully her counts will start to rise soon and her body will heal quickly.
They ordered a teeny tiny dose of morphine to go with her Zofran and she finally has a smile on her face again. She even ate a bit of yogurt after the medication kicked in.
She has alternated between feeling ok and feeling really awful throughout the day. She has been sleeping a lot too.
We’ve been getting her morphine and Zofran when she needs it and it does seem to be helping.
I managed to get in the shower after her last dose as it makes her a bit sleepy. Once I was sure she wasn’t nauseous anymore I put her in bed and got a long awaited shower. I wanted to sneak downstairs today but she wasn’t having it… she has some kind of sensor and she knows when I’m thinking about leaving the room!
I think I’m going to call it a night and try to rest a bit before she wakes up. Last night was spent in the chair and I’m hoping tonight won’t be but I’ll do whatever I need to do to make sure she’s ok.
We love you all and we appreciate all of the prayers and support!